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Despite four brain tumors, fourth grader tries to be "normal"

4/14/10 (Wed)

A little help from his friends . . . Fourth grader Alex E., center, laughs a lot
with his friends, from left, Eric, Colin, Braydan, Douglas and Jake.
Not pictured is Kyle. Alex has faced four benign brain tumors, but chemo
treatments have damaged his spinal nerves to the point he's lost strength
in his right leg and must rely on a walker. Kenmare school students will
participate in two fund-raising events this month to help Alex and his family
with expenses related to his frequent medical visits to Fargo.

By Caroline Downs

Listen in on a conversation with Alex Emeline, who turned 11 last month, and his friends from school, and you’ll hear them talking like any group of fourth grade boys about their interest in monster truck rallies, computer games, Star Wars and Alex’s pet rabbit Scurbie. A few jokes and plenty of teasing get sprinkled into the mix, too.

But when the talk turns to the PeeWee wrestling team or riding bikes or jumping on the trampoline, Alex and his friends miss the old days, before January, when Alex had two good legs.

“He’s just a living, normal person,” said Jake Wink with a shrug.

A living, normal person who has faced the diagnosis of four non-cancerous brain tumors, known as ependymomas. Alex’s treatments have included surgery, radiation and chemotherapy, and the results have been mostly successful--except for the fact the chemo treatments may have damaged his spinal nerves and he has essentially lost the use of his right leg.

Since February, Alex has relied on a walker to be mobile at school, home and around town.

His friends use the phrase “That sucks” to criticize his condition, and then move on to talk about how they live with it, because they’re certainly not going to leave Alex behind.

Douglas Bauer knew Alex when they both lived in Miles City, Montana, years ago. Kyle Lay is another former Montana friend. Jake Wink said he picked Alex as a friend because he likes to be friends with everybody in his class, and Eric Burtch rode bikes and went to birthday parties with Alex.

Braydan Winzenburg joined the class in third grade. “I thought Alex was a cool guy to hang out with,” he said.

Colin Robbins, the new kid in town, arrived in Kenmare for fourth grade. “He lives close to me, and he was nice when I came,” he said. “He’s just a great person!”

They agreed the walker looks funny, and they all laughed as Alex imitated the way he held onto it with his right hand in Phy. Ed. one day in order to bat a ball with a powerful left-handed swing.

They’re learning to look out for Alex and help him around the school. “We take his books for him,” said Eric.

“And I sign him up for the milk account,” added Bauer. “And most of the time, we help with the doors.”

Then the boys looked at each other and laughed with Alex as he reminded them of the times they’ve forgotten about the door, and what he had to do to get their attention.

A kid’s long medical history

Alex is the oldest of Becky Hartse’s four children, including Natalie Emeline in first grade, Zoe Emeline in preschool and Sophia Hartse, who is three and a half months old. “Alex is pretty outnumbered,” Becky said. “He’s got three sisters.”

The first signs of trouble came when Alex was four years old. “He looked like he had the stomach flu for about two months,” said Becky, “and it progressed to always complaining about headaches.”

After several examinations, doctors in MilesCity located a tumor on Alex’s brainstem causing a buildup of spinal fluid that resulted in Alex’s symptoms. Alex and Becky were taken by a medical life flight to Salt Lake City where the golf ball-sized ependymoma was surgically removed.

“Then, he had six weeks of radiation,” Becky said. “We came home and had no problems for four years.”

Alex has few recollections from that experience. “I remember racing my mom across the street in Salt Lake City,” he said.

By 2007, Becky moved her family to Kenmare, where they rented a house from her aunt Nora Enget. Becky works for Danny and Sara Schlosser. She also enrolled in online courses from DakotaCollege at Bottineau, taking two or three classes each semester as she pursues a future in nursing, and became engaged to Gary Fladeland.

Alex had kept up with routine doctor visits and MRIs, and stayed tumor-free until a month after the family arrived in Kenmare. The headaches returned then. “Dr. Sabiiti ordered a CAT scan, and two days later we drove Alex back to Salt Lake City,” said Becky.

Alex’s surgeon removed a second tumor similar to the first, and the medical staff referred him to the RogerMarisCancerCenter in Fargo and Dr. Nathan Kobrinsky.

“That was in October 2007,” Becky said. “He had the surgery and came home to have six months of chemotherapy, because he’d maxed out on the radiation allowed when he was four years old.”

By the next August, Alex had a third surgery at United Children’s Hospital in St. Paul, Minnesota, to drain a new supply of fluid accumulating on his brainstem. This time, a pea-sized tumor was the culprit and a second round of chemo followed.

October 2009 saw Alex deal with his fourth tumor, a benign growth forming in the left frontal lobe of his brain. He was still taking chemo treatments from the previous tumor, but he underwent stereotactic radio laser surgery to remove the new growth. He also changed his chemo regimen.

“On New Year’s Eve, he had his last chemo treatment,” said Becky. “Not two weeks later, he started losing the use of his right leg. He was dragging it when he walked.”

For three months, Alex and Becky traveled back and forth to Fargo, dealing with more medical tests. Alex received gammaglobulin treatments (IVIG), designed to improve his autoimmune responses, in case his body’s systems were working against themselves.

Finally, just before Easter, the family was told Alex’s condition was most likely related to the way the chemotherapy drugs had to be injected into his spinal column during treatments last fall.

Becky described it as direct damage to the nerve roots in the base of the spine. “The doctor believes it could be permanent,” she said.

The IVIG treatments were stopped, but after two weeks, the condition of Alex’s leg deteriorated even more. “We’ve returned him to those treatments,” said Becky. “They’re doing something for him.”

A full brain and spine MRI also revealed some type of mass still present at the site of the tumor removed from Alex’s left frontal lobe. “They’ll just leave that alone for now if it doesn’t change,” Becky said. The mass could be scar tissue, regrowth of the former tumor, or something completely unrelated.

Since the recurrence of Alex’s tumors in 2007--a situation that seems likely to continue--Becky has included her son in all the decisions about his treatments. “I don’t keep any of this from him,” she said. “He sits in and listens and has input into the decisions.”

By the end of February, Alex had tried two canes, one decorated with skulls and the other to look like a wolf, but he came to depend on the walker. “That gives him both hands for balance,” said Becky. “At school, if someone even slightly bumped into him, he was falling. Gary’s mother loaned him the walker.”

He goes to physical therapy sessions in Kenmare and uses some of his Phy. Ed. time at school to work on the exercises. He also takes prescription painkillers.

“It’s like some of the strength from my leg transported up to my voice!” said Alex. “I can’t stand without my walker right now.”

Good humor helps

Most 11-year-old boys could get frustrated with these medical problems, much less using a walker, but Alex has stayed positive through the experience. “He keeps a good humor,” Becky said. “You would think it would stop him, but it doesn’t.”

Alex said some of his bad moments with the doctors came when they checked his nerves. “They would shock my leg, putting needles in my leg, when it started,” he said. “The worst was when they numbed my head and put in the gold seeds for the CAT scans.”

Becky laughed as she described the way he interacts with his sisters at home. “They’re good at teasing Alex when he’s using the walker,” she said. “He’ll ask them to get him something, then they’ll stand purposefully out of his reach. He’s good about planting himself on the couch and having his sisters do things for him, but I want him to stay as independent as he can.”

Mother and son have their own jokes about the situation. “I tell him he’s 11 years old and his brain is worth a million dollars,” Becky said, “so he’d better go to college with that thing. He tells me, ‘No, Mom, I’m going to be the pizza delivery guy.’”

On the road

The tumors, the surgeries, the chemo treatments and the recent complications mean that Alex hits the road with his mom almost every week. If they’re lucky, sometimes two weeks. His little sisters ride along if the appointments fall during days they don’t have school.

Although traveling as a family can be fun in some situations, the round-trips to Fargo take their toll. “We put 60,000 miles on [our vehicle] in 10 months and blew up the motor,” said Becky.

Alex and his mother sometimes stay at the Ronald McDonald house in Fargo, which provides rooms for families seeking medical care. The whole family has also become well acquainted with staff at a particular motel in Fargo, where Becky is charged a reduced rate because of Alex’s routine visits.

All that travel means Alex misses school on a regular basis, but Becky minimizes his absences. “We would try to set up the chemo appointments for noon or 1 pm, so he and I would leave by 6 am,” she said. “Then, we’d make it home by midnight or one o’clock so he was only missing one day of school. And the trips will continue, because he’s back on the IVIG treatments.”

Alex’s condition has mystified medical staff in Fargo, who can’t explain why only one leg has been affected by the chemo treatments, so Becky is seeking a second opinion. At the end of June, Alex has an appointment with the pediatric neurosurgeon in Minnesota who did the surgery for Alex’s frontal lobe.

“They’ve agreed to take him, and there might be something a second set of eyes will pick up,” said Becky. “At the beginning of January, we thought we were done. Now, we’re just going day by day.”

Alex has another reason to look forward to summer vacation, however, because he and his family have been granted a weeklong, all-expense paid trip to Disney World in Orlando, Florida, by the Make-A-Wish Foundation.

Alex gets excited when he talks about the trip, sharing his plans in a torrent of words. “The best part is that a limo is picking us up from the motel in Minot,” he said. “We’ll go to Sea World, and Zoe’s really looking forward to seeing the princesses and Mickey Mouse, and we’re all looking forward to swimming with the dolphins! And I’m looking forward to going underwater in a submarine!”

Even though Alex and his family have lived in Kenmare a relatively short time, Becky said she appreciates the outstanding community support. Encouragement and offers to help started with Alex’s first trip back to Salt Lake City, hardly a month after the family arrived in town. Becky’s two aunts, Nora Enget and Jeanitte Hartse, have stepped in to care for their young nieces when Alex and his mom have to be on the road.

“I can’t even begin to remember all the people who have helped us out over the years,” said Becky. “I have people I don’t even know come up and ask me how he’s doing.”

A good soul and a lot of laughs

Alex’s friends hope other kids and adults look out for the fun guy they know, rather than ignoring or, worse, harassing a kid bumping along with a walker. “He’s dealt with so much over the years,” Jake said. “People need to know how much he’s going through and if he’s going to survive all this.”

Braydan is impressed with Alex’s ability to handle all the interruptions. “He’s going to the hospital every Tuesday and having tests, and he gets caught up [at school] when he gets back,” he said.

Colin wants others to see what a great person Alex really is, and Eric has been concerned about the latest round of Alex’s painkillers. “When he first started taking them, they made him fall down,” said Eric, which prompted a laugh from Alex before he reassured his friend the dose has been reduced.

“People need to know Alex’s story,” Douglas said. “They need to know this could kill him, and I want people to help him.”

As the boys talked about the fundraising activities for Alex (see related article), Alex listed his own best traits. “I am nice, gentle,” he said, then stopped. “Okay, not gentle.”

“He’s a maniac!” Jake said while the rest of the group snorted with laughter.

Alex started again. “I’m a nice, kind, caring creature,” he said, before losing his composure again.

“He’s a good joke teller,” added Douglas, “but they’re not all appropriate for school!”

“

And he has a good soul,” finished Jake.

And the whole group dissolved into snorts and guffaws, one of the very best ways to deal with Alex’s situation.